Thursday, January 30, 2014

Almost seven years after I first was dismissed over my concerns I suffered from Cushing's, I am disheartened to talk with undiagnosed Cushies who are suffering the same way.

There is just no good reason. That's right I said it. THERE IS NO GOOD REASON THAT CUSHIES AEE SUFFERING TO GET DIAGNOSED AND TREATED.

Always in an effort to put these dots close together for our medical professionals, I am posting a Moxie favorite. This lists the most common symptoms of Cushing's. Print it and fill it out. Add other symptoms.

If your doctor dismisses you, don't get too discouraged. Dismiss her/him! On the spot! Please don't allow anyone to ignore and silence you. Like bad boyfriends and bad girlfriends, don't waste one more minute on a bad relationship.

You are a bright shining star, and when you get better, you will shine bright again. Get yourself there.

Wednesday, January 29, 2014

There is no such thing as a minor surgery or a simple outpatient procedure. This is one if many ways that life without adrenals changes. A normal body uses cortisol to cope with the trauma that occurs to the body during these "easy" procedures.

Before you have dental or medical procedure, please understand how to increase your steroid coverage to keep yourself out of adrenal crisis.

Follow this link to very detailed information outlining how much steroid to take for different procedures and operations.

Tuesday, January 28, 2014

Our good friends at Stop the Thyroid Madness shared this post about aldosterone. For a recent BLAer, this importance of this hormone cannot be overstated. Cushies are adjusting cortef/hydrocortisone doses and fludrocortisone doses. The scary part is that many of us feel lost and quite get a grip on this hormone and what it means and how to adjust based on our lab results. Well, here is some information I'm slot trying to commit to memory. My Cushie brain is still dull and unable to learn new material.

"Low cortisol due to worn out adrenals is common among a large body of hypothyroid patients, and it can be necessary to supplement with cortisol, or bring it up with the T3CM. But along with cortisol, there's another adrenal hormone that you may need to investigate with your doctor: aldosterone.

WHAT IS ALDOSTERONE? Aldosterone, a steroid hormone just like cortisol, is produced in the outer cortex of your Adrenals (along with cortisol, testosterone, DHEA, DHEAS, androstenedione and estrogens). Aldosterone is the principal of a group calledmineralocorticoids, and it helps regulate levels of sodium and potassium in your body–i.e. it helps you retain needed salt, which in turn helps control your blood pressure, the distribution of fluids in the body, and the balance of electrolytes in your blood. It does all this by stimulating your kidneys to both take in more sodium while releasing excess potassium–a vital balance in your heath and well-being.

WHAT EXACTLY STIMULATES ALDOSTERONE PRODUCTION? Several things will stimulate your aldosterone secretion: when you potassium levels go too high, if there is less blood flow to your kidneys, or if your blood pressure falls. On the other side of the coin, aldosterone secretion will falls if your potassium levels fall, the blood flow in your kidneys increases, blood volume increases…or if you consume too much salt.

WHAT HAPPENS IF ALDOSTERONE GETS TOO HIGH OR LOW? When aldosterone gets too high (as it can under stress and as your cortisol goes too high), your blood pressure also gets too high and your potassium levels become too low. You can have muscle cramps, muscle weakness, and numbness or tingling in your extremities.

But when it gets too low, which can be common in some patients with cortisol deficiency, your kidneys will excrete too much salt, and it leads to low blood pressure; low blood volume; a high pulse and/or palpitations, dizziness and or lightheadedness when you stand; fatigue; a craving for salt. Symptoms of low aldosterone can also include frequent urination, sweating, a slightly higher body temperature, and a feeling of thirst, besides the craving of salt. Potassium can at first rise too high, then fall, as well.

A CLUE: Is your dog licking your legs? That is indicative of the salt wasting by low aldosterone.

Another clue that your aldosterone may be too low is being on high amounts of HC, such as 30-40 mg, and not getting good results…i.e. you seem to be continually chasing stable temps. (Before getting on HC, learn of a way to raise low cortisol with the T3CM.)

WHAT ROLE DOES ADDING SEA SALT AS A SUPPLEMENT PLAY? Adding salt, but specifically sea salt, can be beneficial to treat the symptoms of low aldosterone. Sea salt contains important trace minerals, whereas they are mostly removed from table salt. Recommended amounts daily are 1/4 to 1/2 tsp in water twice a day…and some go a little higher, if needed.

Bob, a patient with excellent knowledge of low aldosterone, states: People with low aldosterone sufferer from "Salt Wasting", a medical term describing sodium leaving the body. When sodium is excreted it takes water with it, causing frequent urination and dehydration. The body will struggle to maintain a proper balance of sodium and potassium in the blood – and these levels often appear normal on blood tests. But within the cells of the body, improper balance of these minerals can lead to fatigue, and is the reason why the pupils will fluctuate when performing the "flashlight test". Persons with low levels of aldosterone crave salt. If they will take a minimum of 1/2 teaspoon of Sea Salt daily their symptoms improve. The "Salt Wasting" still occurs, but the symptoms of improper electrolyte balance will often improve, and they will feel more energy."

But….you have to be careful, as too muchsodium supplementation can drive aldosterone down even lower, and can increase your thirst all over again. A more important supplement can be potassium, which supports aldosterone levels, especially if potassium levels are low.HOW DO I TEST FOR ALDOSTERONE?Testing for aldosterone will be either a 24 hour urine test or a blood test–the latter which is more highly recommended to pursue with your doctor. It may also be important to avoid all salt for 24 hours before the test, and to be moving around for two hours before you test. 8 am is a good time to do the test since aldosterone levels would be at their highest in the early morning. It's worthy to note that aldosterone levels can be doubled if you are pregnant, and are normally a little higher in children than in adults. For a complete picture, ask your doctor to include your renin for a complete picture, as well as sodium and potassium. See a testing facility without a prescription below.

You can also try a self-test–the pupil test, listed in Discovery Step Two on the Adrenal page. The blood pressure test from a supine position to standing can also point to your adrenals.

When lab testing, you are looking for 2 to 16 ng/dL if done laying down, and 5 to 41 ng/dL for upright. A good resource about results ishere. There can be some variations for different lab facilities. More in Chapter 5.

IMPORTANT NOTE FOR WOMEN: it is strongly recommended to test your aldosterone in the first week of your menstrual cycle and not later. Just as in pregnancy, higher progesterone levels, especially around mid-cycle and later, can drive your aldosterone falsely up, since aldosterone is made from progesterone.

WHAT MEDICATION DO I TAKE IF SEA SALT/POTASSIUM ISN'T ENOUGH TO TREAT MY LOW ALDOSTERONE? The treatment of choice is fludrocortisone acetate with the brand name Florinef, a very potent steroid with mineralocorticoid properties . Patients and their wise doctors have learned to start with a quarter pill (25 mcg or .025 mg) and raise by that amount every 5 to 7 days until they get to 100 mcg. (0.1 mg) rather than starting out on 100 mcg. Many will note good effects fairly quickly; others may need at least two weeks.

Florinef is a very powerful treatment, thus the reason to start low and work up in low amounts every week or so, patients have noted. Going up to 100 mcg is common, but you'll know if it's too much if your blood pressure goes up and potassium takes a serious dive. Check with your doctor for further information. It's also important to note that some patients who are already on HC (cortisol) may have to lower it to compensate for the glucocorticoid potency of Florinef. It's also recommended to take your Florinef with sea salt mixed in water.

Another method patients use to check on their Florinef use is the laying down/standing up blood pressure test. See Discovery Step Two, Test one, here. Bottom line, when using Florinef, keep track of your blood pressure, your pulse, and your electrolytes sodium and potassium.

Update: if you don't have hypopituitary or untreated diabetes, you can bring back BOTH your cortisol and aldosterone levels with the proper use of the T3CM and avoid the potential side effects of HC and Florinef. Read the link carefully.

WHY DO I NEED BOTH FLORINEF AND CORTEF SINCE BOTH ARE STEROIDS? If someone is hypopituitary or wasn't able to make the T3CM work well for them, and they know they have low aldosterone along with their low cortisol, why both steroid? Because Florinef (fludrocortisone) better imitates what Aldosterone does, and Cortef (hydrocortisone) better imitates what cortisol does.

Florinef has greater mineralcorticoid activity, just like Aldosterone does. To have mineralcorticoid activity means it controls electrolyte and water levels, mainly by promoting sodium retention in the kidney. (yours is low, thus the reason you urinate a lot, and lose salt because of that.).

Cortef has greater glucocorticoid activity, just like Cortisol does. To have glucocorticoid activity means it controls carbohydrate, fat and protein metabolism and is anti-inflammatory. It allows thyroid hormones to get to your cells.

So you can see that Cortef won't help you retain salt, just as Florinef won't help thyroid hormones get to your cells.

Go here to order your own tests.

Want to order your own labwork for aldosterone and renin, plus electrolytes?? STTM has created the right ones just for you to discuss with your doctor. Go here:https://sttm.mymedlab.com/

TED: I started taking Florinef (100ug) two weeks ago, before knowing the dosing from Chris (i.e. not to start on 100ug). Never had a problem, and felt the difference the first day. All positive. Going off salt to take the aldosterone test isn't an option for me. I'd be in a coma long before the test date! I'm now on 40 mg Cortef, 120mg Armour, 100ug Florinef and feeling far better than I've felt in many years. I'm sure I'll stumble along the way as I increase the Armour, but I think I'm prepared for that. My constant "background" headaches have virtually disappeared……incredible!!!

MICHELLE: I have been on .1 mgs florinef for about 2 months now and what a difference. Before Florinef, I would drink and drink water and still was so puffy. And talk about being dehydrated! I would wake in the morning dying of thirst. I was constantly breathless, and my hearttrate was over 100 resting. Since being on Florinef, I notice increased energy towards the end of the day. I'm not so dehydrated and I handle heat alot better. I also don't feel so out of breath all the time. My pulse is now is 75-80. I don't need to take as much salt, since I think I get enough from my foods. I do notice if it is really hot out and I am sweating alot, I might do 1/4 tsp of sea salt and I am ok. For me I know I am taking too much sea salt when my legs cramp.

Have a Florinef success story? Send it via the STTM Contact below and we'll get your story up to inspire others. Keep it short like those above.

Nah. I don't feel like it. I don't want to write down all my happenings. I want to clearly explain everything but that takes time. I don't feel like explaining things today.

It has been 28 days since my BLA on 12/31/2014. The day of my surgery, I was given 300 mg of hydrocortisone intravenously. I was given 150 mg the next day. I have been tapering down since then. I left the hospital on a dose of 45 mg hydrocortisone at 7:30 am and 15 mg hydrocortisone at 3:00 pm. I added 0.05 mg fludrocortisone, a replacement for the hormone aldosterone), twice a day since I was post-op day 6. Every week or so, I decrease my hydrocortisone dose to something near 15/5. I am getting pretty close so that is good. My doctor will like that, because if I take more than my body needs, the extra hydrocortisone gives me Cushing's again. EEK! NO!

Last Sunday, I dropped my dose again from 20/5 to 17.5/5. I took the former dose for 7 or 8 days. Even that small of a drop takes the wind out of my sails. On Sunday, I woke at 7:30 am and was back asleep for a nap by 11:00 am. This, too, will pass.

This quote clearly explains why I continue to work so hard to bring information to Cushies and change the medical world we must navigate. I can only hope that I can make an impact in this world.

A friend sent the quote below this week, and it immediately struck me in two ways:

1) Dr King's poignant reflection fifty years ago on what this country needed them and still needs now

2) the significance that such a statement holds for the Cushing's community of patients, advocacy community, and medical community of doctors and surgeons.

"One of the great liabilities of history is that all too many people fail to remain awake through great periods of social change. Every society has its protectors of status quo and its fraternities of the indifferent who are notorious for sleeping through revolutions. Today, our very survival depends on our ability to stay awake, to adjust to new ideas, to remain vigilant and to face the challenge of change."

Saturday, January 11, 2014

Cushdar is a word I made up 10 mins ago. Similar to radar and sonar, it's the keen sixth sense Cushies develop about their bodies and cortisol cycles that defy scientific or medical explanation. A Cushie always knows best.

I'm post op BLA day 11 and made it through day three at dose 25/5 (hydrocortisone 25 mg at 8 am, 5 mg at 3:30 pm). I dropped from 35/7.5 (12.5 mg is a little too big of a drop) because I had symptoms of high cortisol again: insomnia, 5 new pimples on my face, a small boil on my chest, and couldn't take a nap during the day for two days. Oh the misery! Haha Also, my mom pulled my husband aside and asked about my medication. She said I had been talking nonstop all day (no, really?!)

** A cortisol meter one day would be nice although I'm pretty impressed with my CUSHDAR. **

On 25/5, I am extremely fatigued by 1 pm and I have happily resumed napping for 2-3 hrs in the late pm. I have no other signs of AI. I am doing pretty well, but I wanted to post and explain my absence. My online and FB presence is spotty, and frankly what I see in the first 10 mins gets my attention for the hour I'm online. I wish everyone well and hope you are enjoying 2014. I love it. Best year yet.

PS. Did I already post about dropping dose and talking too much? Shoot. I don't even remember anymore.

Wednesday, January 8, 2014

I wanted a quantitative way to track my progress post BLA. My mother, a fantastic seamstress, took my measurements in 12 different places on my body the night before my surgery. I will use this to monitor the impact of bilateral adrenalectomy and even assess whether I made the right decision for this irreversible treatment.

I also check in mentally and emotionally each day. I dug out and will restart my gratitude journal that Cushing's emotional imbalance kept me from filling. I feel happy and content. I'm not filled with rage and frustration, classic symptoms of high cortisol. I am grateful and filled with love. My mind is clear, and my heart is open. My body and my mind are no longer fighting. They are in harmony. I feel happy.

Cushing's never let me feel that way.

My body is no longer hanging on to fat because my cortisol is no longer high. Cortisol is the hormone that controls stress response. High cortisol tells your body to pack on fat to protect vital organs in event of bear mauling or being chased by a lion.

My abnormal adrenal glands (weighing 10 and 13 grams when normal is 4-6) were spewing cortisol out and flooding my body. My basement and whole house was under water, but even some doctors said no and blocked surgery.

On New Years Eve, I shut the valve of overflowing cortisol when I was brave enough to trust my body and agree to remove my adrenals. By taking steroid cortisol medication each day, I now take less than my body was making due to the tumors. I take 35 mg hydrocortisone at 7:30 am and 7.5 mg hydrocortisone at 3 pm to replace cortisol made in adrenals. I take 0.05 mg Florinef twice a day to replace the aldosterone hormone also made in the adrenals. I will take these pills, in varying doses, every day for the rest of my life.

Bilateral adrenalectomy is not the latest weight loss surgery. I am seeing results because tumors took over cortisol production and my body was flooded. Now my body is reacting--as it is built to do--by dropping weight it no longer needs.

Thank you for your love and support. It's an incredible ride.

-- Melissa

***Total inches lost***

7 days post op BLA

* measured by seamstress mama** double checked many times for accuracy

Monday, January 6, 2014

Guess who wrote the adrenal chapter of this very well-known and recognized medical textbook? Our very own Dr. Theodore Friedman!

"Students, residents, and instructors swear by Andreoli and Carpenter's Cecil Essentials of Medicine because it presents just the right amount of information, just the right way. Edited by the late Thomas E. Andreoli, MD as well as Ivor Benjamin, MD, Robert C. Griggs, MD, and Edward J. Wing, MD, it focuses on core principles and how they apply to patient care, covering everything you need to know to succeed on a medical rotation or residency. Masterful editing and a user-friendly full-color design make absorbing and retaining information as effortless as possible, and Student Consult online access offers convenient, flexible reference to the complete contents of the book plus additional clinical photos and radiologic images, videos demonstrating procedures, audio recordings of heart and lung sounds, and more."

This is a very comprehensive and informative read! Excellent job, Dr Friedman.

Sunday, January 5, 2014

Adrenal glands, red in this image, are buried under all that human organ stuff in the abdomen.

I used to see BLAers, a term of endearment for those Cushies who have opted for surgical intervention with bilateral adrenalectomy, and watch them with awe and amazement, thinking they were BRAVE-- so brave to face uncertainty of Addison's because they knew, just knew, that shutting off the spiget of cortisol was the right thing to do. Taking that leap into the unknown is a very difficult thing to do, especially when the medical community and even family and friends warn you of the risks, lifelong changes, and irreversibility of the procedure.

Now that I have had my BLA, I *know* that we Cushie BLAers are brave, and that I am brave, too. This group of brave souls will save each other's lives over and over. We do so gladly. We reach out to one another for help and we hold on to one another in crisis. We are forever bonded by what we lack: adrenals.

I was discharged on Friday on a dose of 45 mg hydrocortisone at 8 am and 15 mg hydrocortisone at 3 pm, plus Florinef 0.05 mg twice a day.

I have been napping a lot, and my mind is calm. My pain level is good--under control. I was hoping to feel this good a few weeks from now. I'm so HAPPY! My brain and body are no longer fighting each other. They now work together towards the common goal of health and wellness. Have a good Sunday, everyone!

- Melissa
Current dose is 40 and 15 hydrocortisone, or 40/15 for short.

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Discovery Health's Mystery Diagnosis

When illness strikes, we look to doctors for answers. What if they can't help? For these unlucky patients, diagnosis is a mystery.

Old and New Me

In 2014, i'm reversing my cortisol in search of my old self

Disclaimer: I Am Not a Doctor

I am not a medical professional. I am not a doctor nor have I gone to med school. I am not a physician assistant, a nurse, or a lab technician. I do not currently work in the medical field.

Perhaps what I can provide is actually better and more useful: a tale of odd symptoms, mild physical deformities, and emotional/mental experiences that match your own. It's not just you! I can share my experience in the diagnosis and treatment of my Cushing's disease. Due to this disease's 'rarity,' I relied on my Cushie friends to guide me as we fight this terrible disease. We all quickly learned the basics and the jargon: the body parts, hormone loops, testing protocals, surgical stats, surgeon bios and pedigrees, and paths to recovery. We have seen patients have successful surgeries, and we have seen patients continue to suffer after multiple surgeries. We watch the story of Cushing's unfold for our friends in real time. Our friends are case studies that are unimpressed by whether something meets the standard of 'statistically significant' to be included in the medical literature. We Cushies see and hear it all. We encourage you to grow the same eyes and ears.

We urge you to take an active role in your health care and work closely with medical professionals. If you find a doctor dismissive, find a new one. Use my blog to supplement your knowledge base but never substitute my judgment or decisions for your own.

And please, don't sue me. I have no money left over after medical expenses. One day, I swear, I'm gonna take a nice vacation.

WHERE TO START IF YOU ARE NEW?

This side bar is intended to be a mini Cushings 101. You will find much of what you need to know here. Click through these links and watch these videos. They are my favorites after researching for Cushing's for six full years now. I started this blog in 2008, so the broad view posts about me can be found there. Click around previous blog posts and read, read, read. You will get scared and overwhelmed, but with information, you will start to take charge of your health and you will arm yourself with what you need to win this war. Because you will, you know. You will win this war.

Looking for something? (under construction)

~BEST ADVICE BASED ON MY EXPERIENCE~

This disease is an enigma - a mystery wrapped in a riddle.

Remove the guesswork and pressure off yourself to know how cortisol ravages your body as it swings from high to low to high levels. Very few Cushies when their cortisol levels are high versus low, and frankly, it is quite unfair that we should have to know. Until someone develops a cortisolometer, similar to a glucometer for testing blood sugar, a Cushing's patient may never know for sure whether the cortisol is high or low. I hope the Addison's community will take the lead on that!

I encourage you to test your cortisol testing every night in a row until you get your highs. Do not skip.1) Do 24 hour UFCs with 17-OHS.2) Get cortisol blood draws at midnight and again 30 minutes later.3) Chew a salivary cortisol test swab while getting your blood drawn each time.

I got my biggest diagnostic highs doing this, after 4 years of trying to follow doctors' suggestions of tracking symptoms and only testing once a night around midnight. Take control. Your mission is to show up every night, and hang in there.

TRUST YOUR GUT. It just might save your life.

I am a cyclical Cushing's patient. I had transsphenoidal pituitary brain surgery on June 11, 2009. By going through my nose with scopes and scalpels, my neurosurgeon removed a 3 millimeter ACTH-secreting benign tumor on the left pituitary that disrupted every hormone and every body system. He says the tumor's cytology was consistent with other Cushing's tumors he has removed in the past, meaning that he removed a milky white substance that was different looking that the normal pinkish pituitary gland cells. Within 3 months of my surgery, I knew I was not cured. I still had Cushing's symptoms, and I tested again for a re-occurrence of Cushing's. In 2010 alone, F*I*V*E endocrinologists told me I don't have Cushing's and they think I never did. They said I had pituitary surgery for nothing. That includes two that I saw before my pituitary surgery. It seems doctors really don't know what to do with a Cushing's patient, much less one that comes back still sick after pituitary surgery.

In February 2011, I tested again at my local hospital, and I hit the jackpot: the highest results for midnight cortisol serums and midnight cortisol salivas that I have had in nearly 4 years. I also had nine straight days of high 17-OHS (used to measure urinary cortisol in patients with mild or cyclical Cushing's). I had diagnostic results on three types of cortisol tests: midnight salivary cortisol, midnight cortisol serum, urinary 17-OHS.

I had a 2nd pituitary surgery on April 20, 2011. The neurosurgeon removed a 5-millimeter benign tumor from the right side of my pituitary. I still suffer from high cortisol and high ACTH, with the latter pinpointing the source as pituitary. No tumor shows on my MRI so in August 2012 I started a medical therapy by taking a well-established medication called ketoconazole. This has helped me reverse some but not all of the Cushing's symptoms. Keto can cause liver damage so I must have liver function tests every three months. I hope I can continue to tolerate this medication until a tumor shows. Next MRI scheduled for June 2013.

WHAT DID I LEARN?Rather than test once in a while, I tested every day. My results clearly showed I had an abnormal cortisol production pattern. I was right. Those doctors were wrong. ALL OF THEM WERE WRONG. Trust your gut. You know your body.

Cushing's Awareness Challenge

What Doctors Will Claim You Have Instead of Cushing's:

Fibromyalgia (no lab tests can prove this; diagnosis given when they don't know what else is wrong with you)

Back and muscle pain

Diabetes

Blurred vision, visual field loss, double vision

Chronic fatigue syndrome

Dry, oily, or sweaty skin

Impotence or infertility

Joint pain, joint/bone abnormalities

Migraines

Muscle weakness, carpal tunnel syndrome

Temporomandibular joint/TMJ/jaw joint pain

Thyroid imbalance or "slow metabolism"

Spreading Awareness to the Health Community

Is it possible you have many conditions damaging your body simultaneously? Sure. Is it more likely that you have ONE condition that explains all that ails you? Yes. That could be Cushing's.

In medical school, doctors are trained that it is better to find one diagnosis to fit all symptoms. Go ahead and ask your doctor about that when s/he tells you that you have multiple overlapping illnesses.

Once you get abnormally high biochemical evidence (ACTH and cortisol) in the form of urine, saliva, and/or blood tests, it is highly probable you have Cushing's. Trust your instincts. Don't let the doctors tell you differently.

Different Doctors Treat Symptoms of Cushing's: A List of Professionals You May Have Seen

The pituitary controls the production of every hormone in the body. We Cushies go undiagnosed as we bounce around from medical subfield to subfield. Each doc treats the symptoms they know best, while piling on the medication.

We Cushies later find that our constellation of symptoms are punctuated with abnormal test results hidden away in our patient charts. No one told us. Since our medical history stays with the office not the patient, one change in doctor leaves these clues to diagnosis behind.

This is why I suggest you take a list of symptoms to every appointment. You won't be boxed in by narrowly-focused questions based on one field of medicine, but you can instead partner with your doctors and discuss your symptoms list so you can get the care you deserve.

DON'T GET STUCK SEEING A SPECIALIST WHO TREATS ONLY ONE BODY SYSTEM. CUSHING'S AFFECTS THEM ALL.

DISCLAIMER: ME AND MY CORCEPT

I want to disclose my relationship with Corcept Therapeutics. I participated in their market research study in Philadelphia, CA in February 2012. I gave feedback on marketing material and told my story on camera for internal educational use. Corcept paid for my travel expenses. In July 2012, I met the Cushing's advocate and nurse at the MAGIC Convention in Chicago. We shared a meal as a group, and she kindly paid for our dinner. In addition, I hold stock in Corcept Therapeutics; not because I am rich, but because I have Cushing's.

Please rest assured that this affiliation will never compromise my intent to bring patients all information I can get my hands on to help them on their road to diagnosis and recovery. You have my word.